Alzheimer's blog

Negative behaviors may signal unmet needs: Part 1

Linnie wrote recently about the meaningful life she shares with her husband even though the past nine years have included living with Alzheimer's disease. Linnie is the primary caregiver for her husband and she is fortunate to employ the help of others as well.

Although I don't know Linnie personally, I am quite sure she is a loving wife and remarkable caregiver. She wrote that she's: " ...always aiming to be loving and respectful, even in times when his behavior threatens to send me over the edge."

I think all caregivers understand what Linnie means when she mentions "his behavior." In caring for a person with dementia, the term "behaviors" is often used to imply some negative distress exhibited and observed in the person with dementia. It can include agitation, paranoia, resistance, or even yelling and hitting.

For a long time I have said to caregivers "Blame the disease, not the person." It's a way to help caregivers separate the person with Alzheimer's from some undesirable behavior, and to appreciate that the person with dementia is not intentionally acting bad or trying to upset, frustrate or annoy caregivers. I still maintain this notion, and certainly we should not blame the person for their disease. Yet, I want to be cautious that we do not simply dismiss or blame the behaviors on the dementia. To do so can have tremendous consequences on the overall well-being of the person with dementia, as well as to you, the caregiver.

It makes sense that behaviors such as agitation, yelling, hitting or uncooperativeness are part of a brain dysfunction linked to dementia, but here's what I want to make clearer — dementia itself does not create these behaviors. The environment, physical discomfort (pain for example), our approach and communication style are just a few things that can have a person with dementia behaving in a particular way.

A colleague of mine recently described dementia as a type of disability where one's experience of the world is shifting over time, and that the distress or behaviors exhibited by a person with dementia are purely an expression of need. I think most of us probably believe that much of human behavior is motivated by specific needs that have to be met. Abraham Maslow, a psychologist, talks about basic human needs — food, warmth, sleep, safety and security, as well as higher order needs such as the need for affection, belonging, love and self-esteem.

A person with dementia has both basic and higher order needs, including those for social contact, physical touch, praise, and a sense of belonging, purpose and control. Yet for people with dementia, their ability to satisfy these needs on their own diminishes over time and can go unrecognized. And as persons with dementia lose their ability to communicate their needs effectively though words and language, overt behaviors fill the void. In other words, behavior is communication.

Caregivers as well as doctors and other professionals tend to label behaviors with words such as difficult, disruptive or, worse yet, will label a person with dementia as combative, resistive or challenging. Yet behaviors are simply communication tools when language and other means of coping are no longer available. I believe one of the best things we can do for a person with dementia is to shift our way of thinking and view behaviors as neither good nor bad, but as a bold sign that there is an unmet need that requires attention.

If you accept what I am saying, then we as caregivers (family, friends) can play an enormous role in easing (and preventing) distress for the person with dementia and ultimately ourselves. Teepa Snow, an extraordinary dementia education and care specialist said recently, "If we can help care partners see the 'behaviors' as the tip of the iceberg and as something to be curious about, to investigate and to explore, rather than to judge, then we can change the entire paradigm."

As a family or professional caregiver how do you begin to investigate, explore and figure out the unmet need? Family caregivers may have an upper hand here because they understand better than anyone the personality traits, life history and personal preferences of the person with dementia. This understanding offers important clues. Yet family members can also struggle the most because this shift requires letting go of the person as they once were, altering expectations and changing well established patterns of communication.

In my next post, I am going to offer more insights as well as specific techniques and strategies for uncovering the message (unmet need) behind the behavior.

Until then, I think Linnie has some excellent advice, "While living with Alzheimer's disease is no picnic, I believe Alzheimer's disease is manageable if one can hang onto an attitude of gratitude, laughter and love."

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